Little Bella has taken the hearts of our family and everyone that meets her. She is our 2nd DS adoption, and we want to share her story with all.

Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Friday, June 19, 2009

Friday

New attending. She is here through Monday. She took a very thorough look at Bella. We looked at nutrition as well as weaning from the vent, the methadone, and the diuretics. Her weight is down to 4.85 kg (10.7 lb). 7 month olds should not be in size 1 diapers. Failure to thrive is one big reason we are still here. Her PEEP is going down to 8. Her methadone will be discontinued tomorrow. And she wants to re-examine her diuretics, but she wouldn’t be an Attending if she didn’t. All attendings freak at her diuretics. We’ll see. I am hoping for good things – like successful baby steps towards home.

One crazy thing about all of these weans is their methods. We will decrease her PEEP until her lungs start to collapse, then we will know how high her PEEP needs to be. We will decrease her diuretics until her lungs start to fill up with fluid, then we will know exactly how much diuretic she actually needs. Isn’t that kinda like asking the question: How close can I put my hand to the fire before I get burned? Answer: I’ll move my hand closer and closer to the fire until I have a burn and then I’ll know exactly how close I can get to the fire. I wish there were ways to figure this out without putting her at risk. The good thing is these are the last few questions before going home. Yeah! They have to find her new baseline. Not an easy task.

Her pulmonologist says that she is doing so well that trach trials aren’t far away – I think the doctors need to talk to each other more. But I am glad that she is doing so well.

Bella had PT and OT today. We are already starting to see some improvements from the daily PT. One of her goals 2 weeks ago was: Hold head in midline for 10 seconds with minimal support. That was passed off today!

I meet the medical director of the home health agency we will be using. As well as the RTs for the new medical supply company we will be using. Someone asked me the other day if I just sit here all day, bored. That would be a “No!” There is always something going on.

5 comments:

Miss Bella look at all the fabulous things you are doing.Such the big girl.Good things are on the way.I just know it.Home is on the horizon little one.Funnny story:When Zoey was in the NICU,there was a little girl that had been there for 8 months.We had only been there for 2 weeks.I kept hearing the nurses and doctors say "Sadie is going to Disneyland this week!"Me,I thought, how irresponsible.8 months in the hospital and the first place they are going to take her is a crowded,germ infested place.Well come to find out,when referring to the little ones getting closer to going home,as not to jinx it the whole deal,they called it Disneyland,"The Happiest Place on Earth."I thought is was the cutest thing ever.So maybe I won't call it home anymore,maybe I will call it Disneyland!Prayers for a great weekend and fun daddy time.

So much happens in just a few short days. I loved the video of her kicking the mobile. Starlee loved Jessie singing. she is doing so well. Can't wait for her to get to go to "disneyland". Coulter's favorite part of the day was naked time until we had to stop that at age 6. Don't tell him I told.... Krystal

Well, maybe I’m too close to see you clearlyOr is it now my role to simply believe?You’re just one of those mysteriesThat may never be solved in timeBut you do — you do — you shine

And Sammy will do what Sammy will do when Sammy is ready to do itAnd Trevor will do what Trevor will do when Trevor is ready to do itAnd Lucy will do what Lucy will do when Lucy is ready to do itAnd they’ll do it in their own time